December 14, 2015

HSC 2015 National Symposium, Regional YPAHD Day, Hike 4 Huntington’s in BC, a couple golf tournaments in Ontario, a used book sale, and quite a few Indy Go-Kart Challenges took place this fall! Indies were held in Essex ON, Mississauga ON, Winnipeg MB, and Langford BC on September 13th, as well as in Halifax NS on October 25th.

The HD Indy Family Go-Kart Challenge was created by a small group of volunteers who wanted to raise funds and awareness for Huntington disease in Canada. The first event took place in Niagara Falls, ON, where participants raised $3,000. HSC’s Indies went national 19 years ago in 1996, and they have since raised well over $1 million for the HD community. Now, as Canada's largest fundraising Go-Kart event, this fun-filled, volunteer-led day is dedicated to Canadian families whose lives are affected by Huntington disease.

An Indy Go-Kart Challenge is a great family event where people of all ages can have a great time while raising money for a great cause. Kick off the next school year with a fun day for the family!

The Ride for a Cure trail ride took place on August 29th, and it was the 6th year of the event! If you love nature, community, and supporting a great cause, this event is perfect for you. In the last 6 years, the event has expanded in terms of participants, supporters, and even the weekend surrounding the day of the trail ride.

When this event was first created, the Peace Country Chapter decided to focus on one big event, and using their strengths and connections in this small community, they found that a trail ride would be a good fit with their target audience and sponsors. Since then, the event has an added chili cook-off the night before the event as well as a pancake breakfast the morning after for those who choose to camp overnight.

The 20km trail is beautiful, leading through creeks and forests. Some individuals even choose to run or hike the trail instead of ride on horse-back. Every so often, there is an informational sign along the trail to learn more about Huntington disease. Organizer, Mack Erno believes that this event has brought a lot of awareness to the area, “Some even save their donation dollars specifically for our cause”.

The growing event has close to 140 riders and 250 supporters for dinner at the event. People often come from as far as 5 hours away, and Bev Heim-Myers, CEO of HSC is a regular guest. in 2015, the event even had a friend from China coming to participate! Through mostly word of mouth, their website and Facebook page, Peace Country brings together this small community to do great things for those affected by HD.

TeamHD had a few changes in 2015, going from the National Running Team of Huntington Society of Canada to a more inclusive team of volunteers, organizers, participants and donors. With these changes came a whole new opportunity to get involved and create events for HSC.

To take advantage of this opportunity, we wanted to create a hub for all things TeamHD, and so we are excited to present to you our new landing page! At TeamHD.ca, you can find everything you need to be a part of our team. Learn about us, register for events, follow us on Facebook, read tips for fundraising, and see a list of FAQs in case you have a question.

Most importantly, we have a way to start a new event! First, fill out our online form that asks all the important questions. Once you’re finished, the form will be submitted to us and we can go from there having all the information we need to help you! Our hope is that this makes the process more streamlined and will encourage more people to organize events in their community.

Another great thing about the new landing page is that it can be used to promote events too! If one of your friends or potential donors wants to know more about HSC events and TeamHD, sending them to TeamHD.ca can give them the information they need to become part of the team too by participating or donating to the cause.

Looking through a Facebook photo album is a great way to get a feel of how an event went and see how much fun was had by those who attended. This event season, we received a lot of great photos from organizers and participants to share with the teamHD community! From the likes and comments they got on our Facebook group, it looked like everyone enjoyed going through and engaging with the event, whether they were able to attend or not.

Here at the National Office, we have not only received photos and videos from the community (such as the Coachman’s Cove Walk and Climb to Conquer events in Newfoundland), we made some as well. Using photos and videos taken at events by staff, participants, organizers, and volunteers, we created videos for the Durham Region Flag Raisings, the Toronto GEMS Walk, and Bert’s 362 KM Run for HD!

Videos are a great way to not only reflect on how the event went this year, but also to promote the event next year and for years to come! Using simple video applications on your personal computer like iMovie or Windows Movie Maker, you can make a photo slideshow with effects and music to go along! You can also take video clips from the event and cut and paste them to make something similar to a movie trailer. There are some great templates that can make it quick and easy to create promotional material.

Things to share in your video can include, but are not limited to:

Date and location of the event

Photos of notable attendees

Games/activities offered at the event

Fundraising total

Testimonials

Photos of people wearing HD swag

Do you have photos or videos you would like to share with us from any of the events this season? We would love to help you with ideas of how you can use your success this year to expand and promote for the next! For support, email events@huntingtonsociety.ca.

The Climb to Conquer event took place in Pasadena, Newfoundland on June 27th, 2015. The group of around 100 people from the Pasadena area came out to climb and walk for Huntington Disease. With the use of personal Facebook pages organizer, Rich Wheeler promoted this event to his friends, family, and business contacts with help from a fitness partner.

Climb to Conquer combined the walk event and climb event this year, with about 50 participants in each. The climbers climbed to the top of Killdevil Mountain in about 2 hours, took photos and had refreshments at the top, and began their descent. Once safely at the bottom, the climbers met at the local Lion’s club with the walkers who had just finished their 5 km walk around town for a barbeque and prizes. This event had a goal of $5,000 and blew it out of the water with $12,000!

Rich has received tremendous feedback from this event. Everyone enjoyed the day and there was an opportunity to spread awareness to those who did not know about HD. Rich’s wife, Ruby is the only person in the community with HD so awareness is a very important component at Climb to Conquer.

“Seeing the support from friends and family who participate is a real satisfaction for me. Sometimes when a person is facing a fatal disease they feel they are alone. We have so much support here from people who just stop us when we walk.” – Rich Wheeler

Rich and Ruby have been involved in organizing events since 2013, and have since organized climbs, as they live in the hiking capital of Newfoundland! They have also started brainstorming a new cross country hike event for next year in the Gros Morne area followed by a social/dance.

“I try to personally thank each and every person who participates. I thanked one lady on the climb when she reached the bottom. I said that it was a tough climb, and thanks for coming along. She said, ‘It wasn’t tough compared to what Ruby is facing with HD’. That says it all!” – Rich Wheeler

Killdevil Mountain is a 1,837 ft / 560 m mountain peak near Pasadena, Newfoundland and Labrador, Canada. Based on peakery data, it ranks as the 99th highest mountain in Newfoundland and Labrador and the 9418th highest mountain in Canada. See the Killdevil Mountain map, 3D fly around, and the Killdevil Mountain photos to get a better sense of the mountain.

The Chapters of the Huntington Society of Canada host numerous fundraising events that raise approximately one million dollars every year for the cause. This amazing feat is accomplished in part by participants utilizing an online fundraising system for a number of these events. The system is a great way to connect with donors, keep donations organized, and track your progress. We chatted with a few of our most successful fundraisers about their online practices to put together tips and tricks on how to make the fundraising experience simple and successful!

It is important to personalize your fundraising page. Inserting a photo of yourself or your family can have an impact on potential donors. Many of our fundraisers also include a write up about their personal connection with Huntington disease and why the HSC mission is important to you. Feel free to share as much or as little of your personal story as you are comfortable with.

It is also helpful for donors to understand how their donations are being used. Adding a sentence or two about HSC’s efforts in providing care for HD-affected families and funding cutting edge research can also make donors feel confident about their gift.

Reach out to your friends, family, co-workers, and others that you know. You can include some of what is on your personal page, your fundraising goal, and other information relevant to the event. Many of our participants have experienced generous donations from peripheral contacts who were unaware of the disease, or their connection to it. Some fundraisers have found that they have regular donors that they can rely on year after year. These fundraisers receive positive feedback, thanking them for updates and expressing their excitement for the upcoming event.

The right timing for emails is also very important. If they are sent too far in advance, people may forget. Two to three weeks before the event has proved to be a good time, but you will know what is best for your contacts. Don’t be afraid to send a follow-up email. Some really appreciate the reminder!

Remember to email the donors right away to thank them and always send a follow-up email with photos of the event and the fundraising total. This is important to maintain a good relationship and show how much their support meant.

The Huntington Society of Canada will be introducing a new fundraising system this summer and will be supplying materials to help you learn the new system and succeed in your fundraising goals. Stay tuned for more information and thank you for all the hard work you do to raise money for those affected by Huntington disease.

*The Huntington Society of Canada (HSC) recognizes that some individuals at-risk for HD may choose not to share their personal stories, as genetic information is not protected in Canada. Genetic test results can be used to the detriment of an individual by insurance companies and employers in Canada. The Society is advocating for genetic fairness in Canada, however, at this time, protection is not in place. Choosing to share for the purpose of fundraising is a personal decision. If you have questions concerning this topic, the Society encourages you to reach out to our National Office at 1 800 998 7398.

The Toronto Run & Hike for Huntington Disease is historically, the most highly attended fundraising hosted by a Huntington Society Chapter, attracting not only family and friends of those affected by HD but connected individuals from the medical community, research community and beyond. This event is a time for the larger community to come together and connect over their shared goal and passion of helping to create a world without Huntington disease.

Though the Toronto Run & Hike for HD is jam packed with fun, it distinguishes itself from many fun-runs by providing chip timing for their running participants. Serious runners have even come from beyond Ontario, and even Canada to the run to time themselves and help with the cause. Still, most participants are families coming together for a fun run and to raise money for Huntington disease research and services provided by HSC. Familiar faces from the medical and research community in Toronto have included Dr. Mark Guttman, a Toronto Neurologist and Clare Gibbons of the Genetics Program at North York General Hospital. CEO of the Huntington Society of Canada, Bev Heim-Myers is also usually in attendance to welcome participants and cheer them on.

Check out pictures of the 2015 Toronto Run at Wilket Creek Park here to see the community of those who are passionate about ending Huntington disease!

The HD community across Canada is a group of passionate and generous people who aspire to a world free from Huntington disease. This group of people support one another and know that there are few people in the world that fully understand what everyday life is like for a person or family affected by this disease. This makes the HD community unique, this makes them a family.

Thanks to this amazing community, the Huntington Society of Canada receives a large portion of their funds from Chapter and volunteer fundraising efforts to put towards research and family services for affected individuals and families. These fundraising events are integral in allowing HSC to support the HD community. The volunteers who organize events, as well as the participants and sponsors who get pledges and raise money for the cause are a special team in the community; making a difference by not only raising money, but awareness for the disease across the country.

We like to refer to this team as teamHD. TeamHD began as a national running team, the idea being that people could run in marathons and other such events across the country, being united in their fundraising efforts for Huntington disease.

This spirit has spread through the community, and even those who aren’t runners want to be a part of this team. Whether you volunteer, organize, run, walk, bike, or even go-kart, you are a part of our team. We are all working towards the same goal: ending Huntington disease. The more people we have on our team, the closer we get to this goal.

We invite you to participate in this dedicated community any way you can and recruit friends and family to join as well. Let us know what you’re good at! Are you a musician, photographer, writer? TeamHD can use all of your talents to benefit those affected by HD. Our teamHD Facebook page is full of opportunities to get involved and be a part of the team! You can keep up with the community and share your photos and experiences by posting on Facebook or using our hashtag #teamHDcan on Twitter and Instagram. Help spread the word and raise money by joining teamHD!

Sprint Into Summer in Pierson, Manitoba took place on June 6th, 2015. It was beautiful weather and they had a great crowd with energy that couldn’t be beat. Registration came first, and then the kick-off with a couple of speakers, including Bert Blackbird who made a surprise appearance, and the K-6 Choir who sang a few numbers. Sprint Into Summer is a family event with walking and running options for all ages and abilities. A few participants are suffering from HD and participate in their wheelchairs, as well as young children who participate in strollers. There was also a barbeque dinner, prizes, and a band to play at the dance that took place after the walk.

It was truly a day for family and friends to gather and raise money and awareness for HD, with around 180 people from this small town coming out to the event. Organizers, Terri Alphonso and Cindy Horrigan shared that an overwhelming amount of people in Pierson have a connection to the challenges of Huntington disease, “With so many being affected, or being close to a family that is affected, it’s easy to feel like there is nothing you can do to help. This event gives the community an opportunity to make a difference”. Everyone seemed to get involved with volunteering for the event! Whether it was individuals bringing a salad, the grocery store donating food, or the fire department barbequing the food, the whole town rallied together around the cause.

The event has evolved over the last three years. Last year, the organizers took advantage of both floors of their venue but found they lost some energy from the guests, “Everyone being all together this year made a huge difference in the vibe of the evening. Everyone had fun”. Their advice is to understand that you can’t please everyone- all you can do is put on a fun event and raise money for the cause.

Although Pierson and the surrounding community is going through a challenging time with the downturn in the oil industry and recent flooding, the generous participants helped raise $12,000 and climbing. Organizers again, attribute this to the strong connection the community holds with HD. This small, community-oriented place is responsible for another successful event- making a difference in the lives of people with HD.

As this year’s Chapter Development Assistant at the Huntington Society of Canada, I was fortunate enough to attend a couple events last weekend with Sally Litchfield. I attended the Peterborough Walk on Saturday, May 23, which was a walk down the main street followed by a fun afternoon of bouncy castles and games that raised over $20,000 for Huntington disease.

The next day in Bowmanville, over 100 participants began arriving for the Durham Region Walk around 10am, greeted each other and spent time catching up before the walk started. There was an atmosphere of family as everyone gathered for the fundraiser. Organizer, Bunny Clark, was prepared and excited for the event to begin with the online fundraising total already over $10,000.

Once the guest speakers, Spider Jones, Adrian Foster – Mayor of Bowmanville, John Henry – Mayor of Oshawa, and Lorne Coe – Regional Councillor from the Town of Whitby, had shared their motivations and gratitude for the event, the participants set off on their walk with enthusiasm. With the use of a banner and signs, the walkers (and quite a few dogs) walked 3 km raising awareness in their community and raising money for HD. They returned to the park for a barbeque and many other activities and opportunities to raise funds, bringing the total raised by the event to approximately $18,000.

People attending the event had the opportunity to take photos saying who they were walking for, as everyone there had some connection to Huntington disease. Whether they were there to support a friend, an entire family, or to find a cure, events like the Durham Region Walk take us one step closer to that goal. Thank you for inviting me to be a part of the progress this weekend. I learned a lot about the HD community and got a taste of what it takes to put on a successful event.

The Niagara Book Sale for Huntington disease is held twice a year, at Fairview Mall in St. Catharines, in the spring and fall. This summer, for the second time, a third book sale was held from June 10-13 at 377 Canboro Road, Ridgeville, ON. Another sale means another opportunity to raise funds for Huntington disease, as well as to clear out some of the thousands of books that Gail and Neil DeKoning have been storing in their barn.

The Niagara Chapter of the Huntington Society of Canada has held book sales for over 25 years; it has become a tradition for which the organizers aren’t sure the origin or even how many years it has been running, it’s simply a pillar of the Niagara Chapter’s fundraising!

Gail DeKoning and her husband, Neil, took over the event approximately 20 years ago when their predecessors stepped back. Gail told us she never expected the event to grow the way it has over the last few years. They have started to turn away certain donations to keep their book collection of over 5,000 books manageable and effective.

That’s where the summer book sale comes in! Last year, Gail and Neil decided that a third additional sale might be a good way to decrease their mountain of books and raise additional funds and awareness for Huntington disease along the way. The summer book sale was a success and will be happening again this year. Thanks to their years of experience, the organizers know what sells and what doesn’t, so they have organized the donated books in the couple’s barn, where they are stored year-round, appropriately for the summer sale.

To anyone who is interested in hosting a book sale in their community, Gail’s advice is to get organized and set the right price. Visitors are more inclined to purchase books if the space is easy to navigate and they feel that they are getting a quality book at a reasonable price, “If the price is too low, they think something is wrong with the books” Gail shared.

The most popular books are novels, which they have piles of, with well-known authors like John Grisham being $2 to $3. They also have many cookbooks and religious books that are very popular. There were books for 1, 2 and 3 dollars, as well as a section where you could fill a bag for $5.

With every book, the Chapter also hands out bookmarks with information on Huntington disease to spread awareness in the community. It’s a great way to start a conversation with people outside of the HD community, even if they don’t purchase a book. The current movement in reading is with tablets and e-readers, though the organizers have noticed people turning back to books, “People like to pass along books that they love to share. You can’t do that with an e-reader”. This is encouraging to hear going forward to the next 20 years of selling books for Huntington disease.

The summer book sale in the Niagara Region is a great venue to donate, spread awareness, enjoy the sense of community through raising funds, and share the love of reading.

For more information, or to volunteer at any of the Niagara Chapter book sales, please contact Gail at gaildekoning@gmail.com.

The annual Peterborough Walk took place on May 23rd,2015. The Peterborough Chapter and this event have gone through many changes in years past, but the event continues to happen thanks to a group of core planners. The Peterborough Walk is the Chapter’s biggest fundraiser of the year and it brings awareness to the Peterborough community and surrounding areas, even as far as Lindsay and Barry’s Bay.

The Peterborough Walk began as a group of 20-50 people who gathered at a local rugby field to walk a couple of laps and connect with each other. These days, the Walk begins at City Hall and continues down the main street that they close for the event. The event is “more than a walk”, says one of the organizers, Emily Neuman, “it’s a fun day in the park with family. We have a barbeque, bouncy castles, prizes, and much more”. The organizers estimate that between those participating in the Walk, and people bringing their kids by for fun in the park, they have around 200 people throughout the day interacting with the event.

The closing of Main Street, as well as the event itself has increased awareness in this community. It’s a way to draw attention to the disease, even to people who are just wondering why the road is closed. In the first few years of the event, fundraisers would go door to door and explain what Huntington disease is. “Most people had no idea what it was back then. Now, people have more of a general understanding” says Emily.

The Peterborough Walk is a great opportunity to enjoy the day with your family and increase awareness for Huntington disease. As Emily said, “It’s more than just a fact sheet. People are connecting”. There are so many activities for the whole family in the park, including bean bag toss, hole in one golf challenge, basketball, dart games, a raffle, music and prizes for both kids and adults.

The Annual Run to Finish HD takes place in Vernon, British Columbia and is run by the Okanagan Chapter. This event was the first run planned in Canada to fundraise for the Huntington Society and 2015 was be the eighth year of the event! The Vernon Run has been a strong and well-supported event in the region since the very first year, and thanks to some core family and friends, they are proud to say their fundraising event is fun and successful!

Posters and brochures are distributed around the community, and with the use of press releases and Facebook community and event pages, the organizers successfully get the word out about their event, resulting in attendance of over 100 people most years. They have also developed a relationship with the Vernon Morning Star, a local newspaper that has supported the event as a sponsor in the past and encourages their staff to participate.

Changes in the running route have shifted and adapted to the needs of participants, and the event has become a time to socialize with community members, eat together, play together, and exchange information with their supportive Social Worker. What hasn’t changed is the feeling of community, the generosity of participants and their families, and the organizers and volunteers who feel a sense of ownership when it comes to the event and their respective duties.

With the experience of the last eight years, the organizers do everything on their check lists and witness the community come together to raise money for a great cause, easily managing any hiccups that might happen along the way! The hard work is rewarded by seeing that beyond the run and raising money, the contribution they make is for those affected by HD.

“It’s wonderful to see how much fun people have and to provide an opportunity for the HD community to share their stories. The event is an chance for family and friends to gather around those with HD.”–Laurie Williams, Okanagan Chapter Member

Thank you to everyone involved in planning and executing the Annual Run to Finish HD in Vernon, BC!

A new event took place on Friday, April 24, 2015 in London, Ontario. Cheri DeLargie, HSC’s London Chapter President, planned a charity dinner and casino night at Bellamere Winery. Cheri was looking for a way to get people outside of the Huntington’s community to participate in an event to spread the word, as well as raise funds. Given that this was a new event, there was much anticipation about of all the hard work it takes to put on an event.

Cheri has planned an annual Golf tournament for several years in London, so she dove in head first when planning this event. She wasn’t alone though; a friend of the HD community, Samantha Elliott, volunteered to help plan and execute the event with Cheri. With the support of the Huntington Society of Canada, the venue was booked, professionals were hired to run the casino, speakers were chosen, and tickets were sold.

People arrived for the evening for dinner beginning at 6:30, during which Leah and Jaclyn Skinner talked about their involvement with HSC and the virtual youth Chapter, Young People Affected by Huntington Disease (YPAHD). Dr. Hyson, a neurologist in London who supports the HD community, then said a few words before the casino began.As a new event, Cheri and Samantha found that it was difficult to get the number of attendees they wanted. Looking outside the Huntington’s community proved to be challenging, as the organizers noted that many people support more well-known diseases and charities. Although there were not as many tickets sold as they had hoped for, Cheri says the event was enjoyed and many expressed their excitement in returning to the event next year, “everyone commented on how fabulous the meal was, the atmosphere at Bellamere was great and what felt like a professional casino really made a huge difference.”

Through all the hard work and countless hours of planning, Cheri says it’s her kids that keep her going, “when my husband was diagnosed, we had no idea that it was in his family. I told myself I would do anything I could to raise money and awareness.” Stay tuned to www.huntingtonsociety.ca/events to get involved in events all over Canada.

About Me

HSC aspires to a world free from Huntington Disease (HD). One in every 7,000 Canadians has HD, a devestating, degenerative brain disorder. The symptoms are like having Alzheimer's, Parkinson's and Schizophrenia in one disease. Every child of a parent with HD has a 50% chance of inheriting the disease. There is currently no cure.